A Win:Win for Data Access: Balancing Public Good with Privacy Concerns

Abstract

This chapter suggests that the current urgent issues facing modern societies demand the best information and knowledge from which decisions can be made. This is vital for governments at all levels, nongovernment organisations and researchers whose work is used by those making decisions and policy. Such information is commonly available but rarely used, linked, re-used and analysed intelligently to inform such decision-making. As many problems are global, finding, sharing and analysing such data in robust national and international collaborations are essential activities. Such problems include environmental degradation, climate change, global pandemics, increases in obesity and mental ill health, overpopulation and city planning, water, security, crime and youth unrest. A recent report entitled From Data to Wisdom, prepared for the Prime Minister’s Science, Engineering and Innovation Council (PMSEIC) made several recommendations to put Australia in a strong position to both monitor and analyse these pressing problems internally and to be at the international table, when appropriate, to participate in planning and evaluating global threats.2 One major issue in population data linkage is the balance between using individual health records on the total population for important public good activities, while at the same time ensuring that such private information is kept confidential. The rationale for using such data includes obtaining accurate and unbiased assessments of risks of disease and the effects of medical care. A win:win process to allow access and to protect privacy that has been developed and used in Western Australia for over 30 years is described below.